PRINTER'S NO. 3549
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
934
Session of
2018
INTRODUCED BY BARRAR, BIZZARRO, CALTAGIRONE, CHARLTON, SCHLEGEL
CULVER, DiGIROLAMO, DUSH, HILL-EVANS, KINSEY, LONGIETTI,
MARSICO, MILLARD, MURT, NEILSON, M. QUINN, READSHAW, RYAN,
SONNEY AND WATSON, MAY 22, 2018
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
MAY 22, 2018
A RESOLUTION
Designating May 16, 2018, as "Congenital Disorders of
Glycosylation (CDG) Awareness Day" in Pennsylvania.
WHEREAS, Congenital Disorders of Glycosylation (CDG) are a
group of rare metabolic disorders that affect normal organ
development and the neurological system, leaving children,
adolescents and adults impaired with significant physical and
developmental disabilities; and
WHEREAS, CDG is severely underdiagnosed and misdiagnosed with
approximately 1,200 cases diagnosed with CDG globally, and only
160 cases of CDG currently reported in the United States; and
WHEREAS, Lack of public awareness and visibility of CDG
contributes to underdiagnosis and difficulties in accessing
specialized services and proper rehabilitation and support; and
WHEREAS, Early diagnosis of CDG is important to ensure timely
management of clinical complications, genetic counseling and
when available, treatment and therapeutic remedies; and
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WHEREAS, The goal is to raise awareness and increase the
accurate and timely diagnosis of this rare group of inherited
metabolic disorders known as CDG; therefore be it
RESOLVED, That the House of Representatives designate May 16,
2018, as "Congenital Disorders of Glycosylation (CDG) Awareness
Day" in Pennsylvania.
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